Tuesday, August 26, 2008

I'm looking forward to hosting next week's Grand Rounds here on A Chronic Dose. Since it comes on the heels of Labor Day and my colleagues and I will soon head back to our writing classrooms, I have decided on a (loose) theme:

Education. I'm interested in hearing about moments where you've really learned a lesson and who you learned it from, whether it took place in a traditional classroom, in a hospital, with a friend or loved one, a patient, etc. (Or, if you were the one imparting knowledge or experience.) Education can take so many forms and have so many "instructors," if you will, that it's pretty open-ended, and I'll consider all submissions.

The deadline is 11 pm Sunday night, August 31st. Please send the post URL, blog URL, and a short summary of the post to laurieDOTedwardsATgmail.com. Thanks so much!

And don't forget to check out this week's Rounds over at Rural Doctoring-it's an English major's delight!

Sunday, August 24, 2008

My last post on how to be better patients to each other stirred up some conversation—turns out (once again) that despite differences in diseases and symptoms, many things unite us, especially when it comes to waiting rooms, hospitals, and emotionally-charged situations.

As a follow-up to that conversation, I want to explore an issue one of my readers brought up in the comments section, something I touched on very briefly in the post—the idea of illness as a competition. “Illness isn’t a competitive sport” is the exact phrase that comes to my mind, and until very recently, I wondered how widespread the phenomenon was. Was it a dirty little secret of life with chronic illness, something that occurred in waiting rooms across the country? Or was it something more unique to the particular doctor’s offices I frequented? Judging from the initial response, I suspect the former is the case.

You know what I’m talking about, right? You’re sitting in your chair, perhaps leafing through a magazine or engaging in idle conversation with other patients in the room. Somehow the conversation around you turns into a bizarre sort of one-up-man-ship, with patients swapping war stories, surgery tales, and escalating degrees of complaints. The tenor has changed from surface-level camaraderie to a competition.

It’s an interesting phenomenon. I’ve never seen it get to the point where there’s almost a fight over whose symptoms are the worst, as others have mentioned, but I have seen it get pretty intense. Most times I ignore it, but sometimes it gets to me and I cannot wait to be called back just so I don’t have to hear it. It’s stressful to sit there and listen to so many things that are wrong. After all, everyone’s got something, or none of us would be there.

My reaction has always been, who would ever want to win the “sick” competition? That just doesn’t seem appealing to me, or worth it, or in any way productive. And I have to believe that no one really does want that title.

Obviously illness can be really isolating, so maybe people are just lonely and need some place to vent. Maybe they’re in a tough phase of acceptance or adjustment and their symptoms are especially overwhelming. Maybe their illness is a huge part of their identity and in the moment, someone else’s condition is somehow a threat to that identity. Who knows. But I don’t believe there’s any maliciousness or mean-spiritedness in it, and I don’t think it’s even an intentional escalation or competition.

And I think it’s just normal human nature to hear something and think, “You think that’s bad, how about X?” I know when I’m at my rheumatologist (which, for whatever reason, is where it happens the most) and listen to the back and forth I sometimes think about someone I know who’s had multiple major (invasive) surgeries and excruciating, degenerating pain and think these people are actually pretty lucky.

And clearly that’s not fair of me. Other people’s pain and illness are still very real and altering even if they don’t seem as severe as someone else’s. (And I say “seem” because really, you never know what someone else life or situation is truly like.)

At the same time, I’ve also felt funny even coughing at my lung specialist’s because I know there are some seriously sick people treated there, people waiting for transplants to save their lives, people who cannot live without constant oxygen, people I know are so much sicker than me. (They’ve never made me feel that way—most don’t even talk, it’s just a self-consciousness I feel).

And that’s not fair either, because this isn’t a competition and no one need apologize for not being as sick.

And I think the reason both those instances aren’t fair is what I will call Rule #7—No one has a market on suffering. Especially when we're at the doctors, and we're probably all a little anxious, and no one's feeling all that well.

Especially when you consider the saying posted over on Hemodynamics:"Be kind, for everyone you meet is fighting their battle too."

I’ve written a lot about the doctor-patient relationship on this blog, and discuss in detail how to establish a successful partnership with doctors and become an empowered patient and advocate in Life Disrupted, and it’s wonderful to see these issues covered from the physician’s perspective.

I’ve spent a lot of time having appointments and tests lately (this recent health static also explains the slight delay in postings this week), and I can’t help but think there’s another angle to this larger discussion on relationships in health care—the patient-to-patient relationship. After all, from crowded waiting rooms and emergency departments to double-occupancy hospital rooms and rehab groups, we don’t just spend time with practitioners when we’re living with chronic illness. We spend a lot of time in close proximity to each other, and since we’re all in this together, there are definitely things we should remember to be better patients to each other:

1. Be punctual, and if not, proactive—Show up on time; one late arrival can often cause an ugly domino effect on subsequent appointments. I usually have an uncanny knack for getting on the road just when a lane has been closed, an accident has just happened, or some other traffic-inducing calamity occurs. As we all know, despite our best efforts and best intentions, life happens, and we can’t always control our arrival time. But if you realize you’re not going to make it in time, make a reasonable attempt to let the office know, and estimate when you think you’ll show up. This way, they don’t give away your appointment entirely, and might be able to make up the time other ways if they have advance notice. It’s the fair thing to do for all the other patients who do show up on time.

2. Cell phones are great in an emergency, but totally annoying in other settings—Loud ring tones and even louder telephone conversations have no place in a waiting room, ER bay, or hospital room. Besides the fact they might interfere with medical equipment, they are disruptive and distracting to other patients, who may already be anxious enough. Keep your ringer silenced and if you do need to take a call, step out into the corridor, the front entrance, or any other place where your personal business doesn’t infringe on someone else’s. I’m always attached to my cell phone, so reminding myself that I don’t have to answer every call or that I can call the number back from outside takes practice.

3. Triage exists for a reason--I can’t count how many occasions I’ve watched people become irate and even antagonistic when they’re waiting to be seen in the ER and others are called first, anything from sniping in their seats when other names are called to repeatedly (and loudly) badgering the front desk. Such behavior makes it harder for the rest of us, who are also impatient to receive medical attention and who are in pain, too. When we’re uncomfortable, scared, and anxious to be seen, it’s certainly understandable that we may get impatient, but the ER is not first come, first serve. That doesn’t make waiting for an X-ray of a broken bone or a CT scan for a painful abdomen any easier, but there’s a reason patients with more severe injuries or complaints jump to the head of the line—their lives may depend on it. As a related item, in a regular office waiting room, remember that many practices have patients in the same waiting room visiting different doctors—just because you’ve been waiting longer than someone else doesn’t mean you’re getting skipped, it just means that person is probably seeing another provider.

4. Remember there’s another side to the story--I’ve totally been that irritated patient in the doctor’s waiting room, annoyed that my appointment time has come and gone and worried about the work I’m missing. But I’ve also been that extremely sick patient who got worked in at the last minute because I couldn’t afford to wait, and my doctors couldn’t afford to delay diagnostic tests and evaluation, the patient who backlogs the schedule and takes up a lot of time. While I’m not always successful at it, when I start to get antsy and annoyed I try to remember the times the tables have been turned and other people have had to wait on account of me. I try to dial it back a bit, and be glad that I am there for non-emergent reasons.

5. Pay attention to social cues--Sometimes, there’s nothing better than some conversation in a waiting room. Whether it’s commenting on a headline, discussing patient education materials, or comparing notes on a similar condition or medication, polite chit chat or commiseration can pass the time and even forge temporary bonds. But you never know what’s going on in someone else’s life, what their health status is, what they’re worried about in their impending doctor visit, what other life problems are on their minds. Some days are just bad days, when people don’t feel like idle chitchat and don’t want to engage in conversation, and may not want to hear about the particulars of your condition. Be sensitive to those cues, and don’t take it personally if someone doesn’t reciprocate your friendly gestures.

6. Don’t make assumptions--I really believe that most people are well intentioned and that comments are made out of concern or curiosity, not maliciousness or spite. With that said, however, be careful about vocalizing snap judgments. One afternoon I was sitting in an infusion room, surrounded by four or five other patients who were also receiving IV medication. We knew we’d be together there for a few hours, and started chatting. The rest were older, and had the same condition and medication. I was there for something completely different, and they wanted to know why I was receiving the medication I was. I answered briefly, and one woman replied by saying, “Really? That sounds bad! You look too young to have that!” and, turning to the person on her right, added, “Doesn’t she look too young to have all that? Makes me feel lucky!” Um, yes. I know she didn’t mean any harm by it, that she was probably just surprised because I had something different than the rest and because she had a daughter my age, but in the moment, it still made me feel like a freak. Clearly I wasn’t too young for it or I wouldn’t have it, and I didn’t feel especially “sick” or serious, so her emphasis on how “bad” it sounded was unnerving. I know I’ve been guilty of the same thing, because sometimes our gut reactions rush to the surface and our responses can have completely unintended consequences.

Really this all boils down to common sense, but in our more trying moments when we don’t feel well and we’re frustrated, it’s worthwhile to think about what we each bring to the patient experience.

Friday, August 08, 2008

As a patient, patient blogger, and all around news junkie, I have to admit when I first heard about health care reform legislation in Massachusetts aimed at reducing costs this past March, I was more than interested. When I learned that part of this legislation involved a ban on gifts to physicians from pharmaceutical companies, I was even more interested. Reduce costs and limit potential conflicts of interest? My heart trilled just a bit. What’s not to love?

But if a recent flurry of headlines about the controversy and heated opinions are any indication, newly modified legislation that makes public any gift of $50 or more a physician receives from a pharmaceutical or other company is anything but simple or obvious—especially in a state like Massachusetts, where the life sciences sector is a huge part of the economy and academic research centers and hospitals are integral.

To wit, an editorial in the Boston Globe urges Governor Deval Patrick to stand firm on the bill, writing that “the state is right to make sure doctors make medication decisions based on merits, and not meals.” At the same time, an op-ed penned by leaders from the biotech and medical device industries outlines their case for why the legislation “will absolutely affect whether companies continue to choose our world-class hospitals for this important clinical work.” Read through them for more background; there’s a lot to digest.

It’s certainly a good time to be a health news junkie in Boston, no?

As always, what I’m interested in how these issues will affect our daily lives. As a patient with rare diseases who knows firsthand how important research and development are to patient outcomes, how could I not be curious? After all, clinical trials are where the developments we count on come from, and if this legislation will have a negative impact on clinical trials, as opponents claim, I’m certainly paying attention.

It makes plenty of sense to me why legislators who want to reform health care and contain costs would support this bill, and it makes a lot of sense to me why patients would care about what their doctors are getting from the companies that manufacture the medications and medical devices that treat them. Patients want the treatments that are best for them, and those are not necessarily the ones that have the largest marketing and promotions budget. Transparency is a hot-button issue in health care right now, and with good reason in this context.

It’s important to me I understand where the positions both sides are taking originate, and clearly it’s not enough to pit this in terms of disclosing physicians’ gifts or not, or making comments about sandwiches and pens. To that end, I chatted today with Dr. David Charles, chairman of the Alliance for Patient Access, a non-profit organization that teaches physicians how to advocate to ensure patients have access to appropriate therapies, to see why there is such opposition to this legislation.

(Since it’s all about disclosure, the AfPA receives funding from industry trade groups).

According to Dr. Charles, a fundamental problem with this portion of the legislation is that it has the potential to set up a “complete misunderstanding” of the relationship between universities, physicians, and the companies (pharmaceutical, medical devices, biologics, etc) that support these clinical trials—and he considers this partnership imperative if we’re to continue seeing progress in understanding and treating diseases like multiple sclerosis or Alzheimer’s, to name but a few.

“This is a step backwards, not forwards,” he says.

Since the information published on the state Web site would mention the physician’s name and the money he/she received that went above $50—and not how the money was used—he fears the flow of funding could be misconstrued. This also goes along with other claims (see links above) that this kind of disclosure would make physicians less likely to participate in clinical trials, meaning companies would then invest in them in other places.

For example, money that goes to the university to help support clinical trials would look like it was simply being paid to a physician, not the university and all the staff involved in the trial. Or, money allocated for a physician to teach other physicians how to use cutting edge technology and devices that improve patient care would not be identified as such. Dr. Charles worries this “disclosure without context” could make what are completely appropriate and essential practices seem inappropriate.

He also had some interesting things to say about the writing of prescriptions, which is often one of the first criticisms patients and policy experts point to when discussing conflicts of interest and gifts from pharmaceutical companies. “Writing prescriptions is not the issue at hand,” he says. Rather, helping physicians understand when to select certain medications—what the side effects are, what drugs they work the best with and which ones they shouldn’t be prescribed with, etc—is the key issue. He views educating physicians about these variables, much like training physicians on how to use new equipment and other forms of continuing medical information, as both completely appropriate and essential for the best care for patients.

So patients (and readers from all points of view), I’m interested in what you think about all of this. As you can see from the media blitz on all sides the debate wages on, but the bottom line is, what is best for the patient? Do the potential risks to the partnership so important to clinical trials outweigh the benefits of the concept of transparency so many of us hold as paramount these days? While we wait for the Governor’s response, I’m eager for yours.

UPDATE, 8/11: Here's an update article from today's Globe that discusses the health policy Gov. Deval Patrick signed into law. Looks like transparency wins--or at least gets a big push! Check out the article; there's a lot of good info the primary care physician problem I've written about before.

As an update to that post, I'm happy to pass along this news story about Michelle's Law, a bill passed recently that, according to the Boston Globe "would allow allow seriously ill or injured college students to take up to one year of medical leave without losing their health insurance."

It's sadly ironic that in cases like this, students with serious conditions who are trying to treat their illnesses or recover are often penalized by losing the very insurance they need to survive. That's why this legislation is exciting, promising, and...logical.